References
- Abadie , R. 2010 . The Professional Guinea Pig: Big Pharma and the Risky World of Human Subjects , Durham : Duke University Press .
- Adams , S. 2010 . “ Sourcing the crowd for health experiences: letting the people speak or obliging voice through choice? ” . In Configuring Health Consumers: Health Work and the Imperative of Personal Responsibility , Edited by: Harris , R. , Wathen , N. and Wyatt , S. 178 – 193 . Basingstoke : Palgrave MacMillan .
- Allison , M. 2009 . Can web 2.0 reboot clinical trials? . Nature Biotechnology , 27 ( 10 ) : 895 – 902 . (doi:10.1038/nbt1009-895)
- Barbrook, R. (2005) ‘The hi-tech gift economy’, First Monday, Special issue no. 3, [Online] Available at: http://firstmonday.org/htbin/cgiwrap/bin/ojs/index.php/fm/article/view/1517 (17 September 2011).
- Bergquist , M. and Ljungberg , J. 2001 . The power of gifts: organizing social relationships in open source communities . Information Systems Journal , 11 ( 4 ) : 305 – 320 . (doi:10.1046/j.1365-2575.2001.00111.x)
- Brabham , D. C. 2010 . Moving the crowd at threadless: motivations for participation in a crowdsourcing application . Information, Communication & Society , 13 ( 8 ) : 1122 – 1145 . (doi:10.1080/13691181003624090)
- Bruns , A. 2008 . Blogs, Wikipedia, Second Life, and Beyond: From Production to Produsage , New York : Peter Lang .
- Bruyninckx, J. (forthcoming) The Mechanical Ear: Scientific Sound Recording in Bird Sound Biology, 1880-1980, Doctoral thesis, Maastricht University, Netherlands.
- Callon , M. and Rabeharisoa , V. 2003 . Research “in the wild” and the shaping of new social identities . Technology in Society , 25 ( 2 ) : 193 – 204 . (doi:10.1016/S0160-791X(03)00021-6)
- Callon , M. and Rabeharisoa , V. 2008 . The growing engagement of emergent concerned groups in political and economic life . Science, Technology & Human Values , 33 ( 2 ) : 230 – 261 . (doi:10.1177/0162243907311264)
- Collins , H. M. and Evans , R. 2002 . The third wave of science studies . Social Studies of Science , 32 ( 2 ) : 235 – 296 . (doi:10.1177/0306312702032002003)
- Do , C. B. , Tung , J. Y. , Dorfman , E. , Kiefer , A. K. , Drabant , E. M. , Francke , U. , Mountain , J. L. , Goldman , S. M. , Tanner , C. M. , Langston , J. W. , Wojcicki , A. and Eriksson , N. 2011 . Web-based genome-wide association study identifies two novel loci and a substantial genetic component for Parkinson's disease . PLoS Genetics , 7 ( 6 ) p. e1002141, [Online] Available at: http://dx.doi.org/10.1371%2Fjournal.pgen.1002141 (8 August 2011) (doi:10.1371/journal.pgen.1002141)
- Dolgin , E. 2010 . Personalized investigation . Nature Medicine , 16 ( 9 ) : 953 – 955 . (doi:10.1038/nm0910-953)
- Epstein , S. 2008 . “ Patient groups and health movements ” . In The Handbook of Science and Technology Studies , Edited by: Hackett , E. J. , Amsterdamska , O. , Lynch and , M. and Wajcman , J. 499 – 539 . Cambridge : The MIT Press .
- Eriksson , N. , Macpherson , J. M. , Michael , J. , Tung , J. Y. , Hon , L. S. , Naughton , B. , Saxonov , S. , Avey , L. , Wojcicki , A. , Pe'er , I. and Mountain , J. 2010 . Web-based, participant-driven studies yield novel genetic associations for common traits . PLoS Genetics , 6 ( 6 ) : 1 – 20 . (doi:10.1371/journal.pgen.1000993)
- Eysenbach , G. 2008 . Medicine 2.0: social networking, collaboration, participation, apomediation, and openness . Journal of Medical Internet Research , 10 ( 3 ) p. e22, [Online] Available at: http://www.jmir.org/2008/3/e22/ (25 August 2011) (doi:10.2196/jmir.1030)
- Fish , A. , Murillo , L. F. R. , Nguyen , L. , Panofsky , A. and Kelty , C. M. 2011 . Birds of the internet . Journal of Cultural Economy , 4 ( 2 ) : 157 – 187 . (doi:10.1080/17530350.2011.563069)
- Genetics and Public Policy Center (2011) ‘Direct-to-consumer genetic testing companies’, [Online] Available at: http://www.dnapolicy.org/news.release.php?action=detail&pressrelease_id=145 (17 August 2011) (Archived by WebCite® [Online] Available at: http://www.webcitation.org/610DDbCns).
- Gibson , G. and Copenhaver , G. P. 2010 . Consent and internet-enabled human genomics . PLoS Genetics , 6 ( 6 ) p. e1000965. doi: 10.1371/journal.pgen.1000965
- Goetz , T. 2010 . ‘Sergey Brin's search for a Parkinson's cure’, WIRED Magazine, July, [Online] Available at: http://www.wired.com/magazine/2010/06/ff_sergeys_search/all/1 (18 August 2011)
- Goldberg , G. 2011 . Rethinking the public/virtual sphere: the problem with participation . New Media & Society , 13 ( 5 ) : 739 – 754 . (doi:10.1177/1461444810379862)
- Hall , W. and Gartner , C. 2009 . Direct-to-consumer genome-wide scans: astrologicogenomics or simple scams? . The American Journal of Bioethics , 9 ( 6 ) : 54 – 56 . (doi:10.1080/15265160902894021)
- Hallowell , N. , Cooke , S. , Crawford , G. , Lucassen , A. , Parker , M. and Snowdon , C. 2010 . An investigation of patients’ motivations for their participation in genetics-related research . Journal of Medical Ethics , 36 ( 1 ) : 37 – 45 . (doi:10.1136/jme.2009.029264)
- Henwood , F. , Wyatt , S. , Hart , A. and Smith , J. 2003 . “Ignorance is bliss sometimes”: constraints on the emergence of the “informed patient” in the changing landscapes of health information . Sociology of Health & Illness , 25 ( 6 ) : 589 – 607 . (doi:10.1111/1467-9566.00360)
- Jenkins , H. 2006 . Convergence Culture: Where Old and New Media Collide , New York : New York University Press .
- Karaganis , J. 2007 . Structures of Participation in Digital Culture , Edited by: Karaganis , J. New York : Social Science Research Council .
- Langstrup , H. 2011 . Interpellating patients as users: patient associations and the project-ness of stem cell research . Science, Technology & Human Values , 36 ( 4 ) : 573 – 594 . (doi:10.1177/0162243910368397)
- Lawrence , A. 2006 . “No personal motive?”: volunteers, biodiversity, and the false dichotomies of participation . Ethics, Place & Environment , 9 ( 3 ) : 279 – 298 . (doi:10.1080/13668790600893319)
- Levina , M. 2010 . Googling your genes: personal genomics and the discourse of citizen bioscience in the network age . Journal of Science Communication , 9 ( 1 ) : 1 – 9 .
- Li , X. 2011 . Factors influencing the willingness to contribute information to online communities . New Media & Society , 13 ( 2 ) : 279 – 296 . (doi:10.1177/1461444810372164)
- Lipworth , W. , Forsyth , R. and Kerridge , I. 2011 . Tissue donation to biobanks: a review of sociological studies . Sociology of Health & Illness , 33 ( 5 ) : 792 – 811 . (doi:10.1111/j.1467-9566.2011.01342.x)
- Mauss , M. 1970 . The Gift: Forms and Functions of Exchange in Archaic Societies , London : Cohen and West .
- McCray , W. P. 2006 . Amateur scientists, the International Geophysical year, and the ambitions of Fred Whipple . Isis , 97 : 634 – 658 . (doi:10.1086/509947)
- McGowan, M. L. & Fishman, J. R. (2008) ‘Using lessons learned from BRCA testing and marketing: what lies ahead for whole genome scanning services’, The American Journal of Bioethics, vol. 8, no. 6, pp. 18–20.
- McGowan , M. L. , Fishman , J. R. and Lambrix , M. A. 2010 . Personal genomics and individual identities: motivations and moral imperatives of early users . New Genetics and Society , 29 ( 3 ) : 261 – 290 . (doi:10.1080/14636778.2010.507485)
- Mitchell , R. and Waldby , C. 2010 . National biobanks: clinical labor, risk production, and the creation of biovalue . Science, Technology & Human Values , 35 ( 3 ) : 330 – 355 . (doi:10.1177/0162243909340267)
- Molm , L. D. 2010 . The structure of reciprocity . Social Psychology Quarterly , 73 ( 2 ) : 119 – 131 .
- Novas , C. and Rose , N. 2000 . Genetic risk and the birth of the somatic individual . Economy & Society , 29 ( 4 ) : 485 – 513 . (doi:10.1080/03085140050174750)
- Offer , A. 1997 . Between the gift and the market: the economy of regard . The Economic History Review , 50 ( 3 ) : 450 – 476 . (doi:10.1111/1468-0289.00064)
- Pálsson , G. 2009a . Biosocial relations of production . Comparative Studies in Society and History , 51 ( 2 ) : 288 – 313 . (doi:10.1017/S0010417509000139)
- Pálsson , G. 2009b . Spitting image . Anthropology Now , 1 ( 3 ) : 12 – 22 .
- Pálsson, G. (2011) ‘Laboring life: tournaments of biosocial value’, presentation at the Genetics as Culture in a Consumerist Age Symposium, Innsbruck, 27 October.
- Panofsky , A. 2011 . Generating sociability to drive science: patient advocacy organizations and genetics research . Social Studies of Science , 41 ( 1 ) : 31 – 57 . (doi:10.1177/0306312710385852)
- Pearson , E. 2007 . Digital gifts: participation and gift exchange in LiveJournal communities . First Monday , 12 ( 5 ) [Online] Available at: http://firstmonday.org/htbin/cgiwrap/bin/ojs/index.php/fm/article/view/1835/1719 (1 October 2011)
- Pels , D. 2003 . Unhastening Science: Autonomy and Reflexivity in the Social Theory of Knowledge , Liverpool : Liverpool University Press .
- Prainsack , B. 2011 . Voting with their mice: personal genome testing and the ‘participatory turn’ in disease research . Accountability in Research , 18 ( 3 ) : 132 – 147 . (doi:10.1080/08989621.2011.575032)
- Prainsack , B. and Wolinsky , H. 2010 . Direct-to-consumer genome testing: opportunities for pharmacogenetic research? . Pharmacogenomics , 11 ( 5 ) : 651 – 655 . (doi:10.2217/pgs.10.33)
- Proulx , S. , Heaton , L. , Jane Kwok Choon , M. and Millette , M. 2011 . Paradoxical empowerment of produsers in the context of informational capitalism . New Review of Hypermedia and Multimedia , 17 ( 1 ) : 9 – 29 . (doi:10.1080/13614568.2011.552646)
- Ray, T. (2011) ‘23andMe, Genetech recruiting patients for Alzheimer's genetics research’, Genomeweb, [Online] Available at: http://www.genomeweb.com/dxpgx/23andme-genentech-recruiting-patients-alzheimers-genetics-research (12 August 2011) (Archived by WebCite®, [Online] Available at: http://www.webcitation.org/60srx1SF2)
- Rheingold , H. 2002 . Smart Mobs: The Next Social Revolution , New York : Basic Books .
- Schäfer , M. T. 2011 . Bastard Culture! How User Participation Transforms Cultural Production , Amsterdam : Amsterdam University Press .
- Shaw , R. 2012 . Thanking and reciprocating under the New Zealand organ donation system . Health , 16 ( 3 ) : 298 – 313 .
- Star , S. L. and Griesemer , J. R. 1989 . Institutional ecology, “translations” and boundary objects: amateurs and professionals in Berkeley's museum of vertebrate zoology, 1907–1939 . Social Studies of Science , 19 ( 3 ) : 387 – 420 . (doi:10.1177/030631289019003001)
- Surowiecki , J. 2004 . The Wisdom of Crowds: Why the Many Are Smarter than the Few and How Collective Wisdom Shapes Business, Economies, Societies and Nations , London : Little, Brown .
- Terranova , T. 2000 . Free labor: producing culture for the digital economy . Social Text , 18 ( 2 ) : 33 – 58 . (doi:10.1215/01642472-18-2_63-33)
- Terry , S. F. and Terry , P. F. 2011 . Power to the people: participant ownership of clinical trial data . Science Translational Medicine , 3 ( 69 ) p. p69cm3, [Online] Available at: http://stm.sciencemag.org/content/3/69/69cm3.full (10 August 2011) (doi:10.1126/scitranslmed.3001857)
- Tober , D. M. 2001 . Semen as gift, semen as goods: reproductive workers and the market in altruism . Body & Society , 7 ( 2–3 ) : 137 – 160 . (doi:10.1177/1357034X0100700205)
- Tung , J. Y. , Do , C. B. , Hinds , D. A. , Kiefer , A. , Macpherson , J. M. , Chowdry , A. B. , Francke , U. , Naughton , B. , Mountain , J. , Wojcicki , A. and Eriksson , N. 2011 . Efficient replication of over 180 genetic associations with self-reported medical data . Nature Precedings , [Online] Available at: http://hdl.handle.net/10101/npre.2011.6014.2 (2 August 2011)
- Turner , V. 1969 . The Ritual Process: Structure and Anti-Structure , Chicago , IL : Aldine .
- Tutton , R. 2002 . Gift relationships in genetics research . Science as Culture , 11 ( 4 ) : 523 – 542 . (doi:10.1080/0950543022000028965)
- Tutton , R. and Prainsack , B. 2011 . Enterprising or altruistic selves? Making up research subjects in genetics research . Sociology of Health & Illness , 33 ( 7 ) : 1081 – 1095 . (doi:10.1111/j.1467-9566.2011.01348.x)
- Waldby , C. 2002 . Stem cells, tissue cultures and the production of biovalue . Health , 6 ( 3 ) : 305 – 323 .
- Wicks , P. , Vaughan , T. E. , Massagli , M. P. and Heywood , J. 2011 . Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm . Nature Biotechnology , 29 ( 5 ) : 411 – 414 . (doi:10.1038/nbt.1837)
- Williams , B. , Entwistle , V. , Haddow , G. and Wells , M. 2008 . Promoting research participation: why not advertise altruism? . Social Science & Medicine , 66 ( 7 ) : 1451 – 1456 . (doi:10.1016/j.socscimed.2007.12.013)